- Видео 86
- Просмотров 41 510
Sjögren Europe
Добавлен 22 июн 2019
Видео
Dysautonomia and Sjogren Disease
Просмотров 1,1 тыс.2 месяца назад
Mental Health by Dr Linda Kwakkenbos
Просмотров 1656 месяцев назад
Chronic diseases have a massive impact in patient's mental health, and this needs to be duly addressed in order to secure an acceptable quality of life.
Fatigue in Sjögren by Prof Wan-Fai Ng
Просмотров 2 тыс.6 месяцев назад
Fatigue is the cause of greatest patient reported disability in Sjögren's. It can be overwhelming, and often debilitating.
What's New in Sjögren's Disease by Prof Vasco Romão
Просмотров 3,1 тыс.6 месяцев назад
Most recent novelties in Sjögren's clinical research presented by Prof Vasco Romão
Sjögren Europe | Clinical research
Просмотров 1306 месяцев назад
Sjögren Europe | Opening Ceremony
Просмотров 336 месяцев назад
Sjögren Europe | Quality of life
Просмотров 2076 месяцев назад
Sjögren Europe - Sjögren’s prevalence
Просмотров 426 месяцев назад
Sjögren Europe - Capability building program: An overview
Просмотров 226 месяцев назад
Sjögren Europe | Non pharmaceuticals approaches
Просмотров 726 месяцев назад
Sjögren Europe - Unmet needs in Sjögren
Просмотров 2436 месяцев назад
Sjögren Europe - Workshop
Просмотров 516 месяцев назад
Neurological aspects in Sjögren's - Alessia Alunno ACSP2023
Просмотров 21 тыс.6 месяцев назад
Neurological symptoms are very poorly or rarely addressed in clinical routine resulting in a massive patients unmet need.
HAPPY NEW YEAR 2024
Просмотров 519 месяцев назад
I ate 4 tins of sardines a day for a week and I now don't have dry eyes any more and my mouth is no longer dry. I eat sardines about 3 x week now to maintain the tears and saliva. What the body needs is Vitamin A. Not beta-carotene. But real, animal based, Vitamin A. And the omega 3s. I also massage the salivary glands and tear ducts. Vitamin D status is also important. Vitamin D is an immune modulator and adequate Vitamin D levels are crucial to control auto-immune conditions. Check your Vitamin D levels! But the sardines, man that was miraculous! Oh, and I was diagnosed about 25 years ago and only just figured this out this year.
Well explained thank you!
I have an extremely itch for two and a half years I have myself so naked up anything I get from the drs. does not help. .The best I have found that gives me some relief is Frankincense Is this itch caused by sjogrens which I have
I was recently diagnosed with Small Fiber Neuropathy. I have SLE Lupus & Sjögren’s (taking plaquinil). I had horrible full body itch (no rash) for years but recent low dose daily steroid and daily Benadryl stopped it 99%. I don’t cry and my throat is always dry. I’m grateful for the meds. Oh, I also take gabapentin and some anti anxiety meds. Also the past few months a multivitamin (low dose ) which stopped my hair from falling out and the Boh’s lines in my nails to grow out. And aerobic exercising about 60 to 90 minutes per day has stopped much of my body pain.
I was just diagnosed with small fiber neuropathy. I don’t have a diagnosis of sjogrens, but I’ve developed dry eyes, mouth, nose at night. My tongue is stuck to the roof of my mouth and it’s like cardboard in the morning. I can’t open my eyes till I put eye drops in the corners. The dry noise actually wakes me up it’s so uncomfortable. Eye doctor said oh that’s common. PCP treats each little thing separately. It’s pretty miserable. Good luck with your treatments!
@@lianagilbert4112 What’s PCP ? Well, you’re going to have to drink a lot more water. Like a half gallon a day to keep those membranes from getting so dry. My doc wanted me to do a full gallon, but I just couldn’t get it down, too much. My nostrils would burn, so dry. And this light aerobic exercise that I do pretty much every day creates sweat and clears out toxins and muck, it’s been a life changer. I do the mini trampoline so I don’t have to leave the house. Just sashay to some music you like, see if it helps.
@@stlounsbury PCP-- Primary Care provider
Excellent overview of Sjogren’s along with neuropathies! I have struggled with both just like my mother and grandmother before me. My grandmother had the symptoms of small fiber neuropathy and autonomic neuropathy. My mother did not have autonomic neuropathy and she did better than my grandmother and me. We also have a genetic muscular dystrophy to make things extra complicated.
Imagine my shock when yesterday the rheumatologist's office called to tell my test results looked very good and that I didn't need to come back in. I tested positive for Sjogren's!!! Apparently they've never heard of it.
How very sad! The good side of this is you know not to ever waste your time with THAT dr. again!
Well, even if they are familiar with Sjogren’s, all they typically know is that it can cause dry eyes and mouth so the disease is not even taken seriously.
Wow!😮
I cannot get diagnosed. Positive ANA HEP-2 SPECKLING + STAINING, negative SSA + SSB. PAROTID GLAND swelling with chronic dry eyes and minimal saliva. Pain and fatigue is nearly unbearable. Uk Gps have no idea, I will probably end up with a lymphoma as I've already been trying to get diagnosis for 5 years. Lupus, SS suspected, also OA as well as B12 deficiency.
@@allisonwales999 I feel you pain, I too am in the same boat!!
54:07 ...not in your condition ... so sad :(
Diagnosos alone doesnt help. Patients need symptom relief. Is there anything new on treatments?
These symptoms are a worry for me as I have been diagnosed with hemiplegic migraines + meniers and FND a whole mix of labels yet no help yet all my symptoms are what the good Dr here described
Last week, I was after 5 years of chonic pain, been diagnosed with Sjogren, Fibromyalgie, and arthrose.
What's your Vitamin D status?
Türkçe alt yazı lütfen.
Data analysis will be performed Dec 2023 ?
It's lyme disease and co infections
@tamiwigginton7137 Lyme disease is caused by a virus. So isn't. It's a different disease. Do you know better than a rheumatologist?
@tamiwigginton7137 Lyme disease is not the same as Sjogren. Lyme disease is caused by a bit of a tic. Borreliose. You aren't teaching rheumatologists what this disease is or are you?!😂
@@tamiwigginton7137 You are incorrect. There are tests for this disease.
@@denisewhite6237 exactly!
I am not hearing impaired but found the volume on this video low - had to strain to hear. I am not having any problem with other RUclips videos.
i think the doctor has a soft voice but the volume should be risen accordingly
Yes I turned volume up full too, straining to hear:(
I live in NW FL. WHO OR WHAT KINDA MD DO I NEED TO SEE
A rheumatologist.
A rheumatologist usually gives a diagnosis of SS and treats but recently I listened to a neurologist on RUclips that says SS is a neurological disease and when he diagnoses a SS patient he treats them and does not send them to a rheumatologist. So possibly a neurologist that is experienced with Sjogren's Syndrome. I have also worked with a Functional Medicine doctor which has been a life saver. They do not diagnose SS but help to find the root cause of symptoms. In the past I've had migraines, seizures and neuropathy. I'm honestly not sure what I did that I no longer have seizures or migraines but the neuropathy I had for decades disappeared when I started taking Alpha Lipoic Acid (ALA) and N Acetyl Cysteine (NAC). Good Luck!
Very informative. Thank you.
Thank you !
Just found this channel-I have RA, PsA, and SS though I’m not sure my rheum has officially diagnosed me with SS. I’ve had horrible dry eye and mouth for 10 years and manage to function, but the fatigue is awful. I don’t have the weight loss 😂
Chciałabym słuchać po polsku.
My fatigue is an overwhelming tiredness. Need to immediately lie down. Weakness in legs more prominent but weakness in all muscles.
Very informative!! Thank you !
I’m RA patient now on Methotrexate and long term steroids for autoimmune disease. I found this interesting because I have neuropathy in my legs. Also dry eyes and mouth and sometimes Reynaulds in my fingers and chilblains on my toes but not as bad as it used to be before meds. It does seem to be some overlap RA and SG. and as you say meds don’t always work or have undesirable side effects 🙄so learning to live with unsteadiness and numbing legs is probably best. I found this vid very interesting thankyou for posting. UK
Overlap of Sjogrens and Lupus as well. I have SLE and I am quite sure I also have Sjogrens. As a matter of fact, they actually come in 3s quite often. I am on Methotrexate for my SLE and Prednisone. I just started treatment but so far out of my million symptoms its only helped my hip pain and fatigue somewhat.
Interesting presentation
The QR code does not work. Can you give an URL instead? I would like to take the survey.
Is there blood test or tests to diagnose Sjogrens ?
Yes, blood panel and lip biopsy.
Blood test 62% false negative
@@natashacollier5248 thank you!
@@juliesteed5285 thank you, I thought so, I am hoping the doctors can find it soon! 🌹
Magyarul szeretnem meghallgatni
Thank you, especially for the reflection at the end! With diffuse symptoms without apparent cause, in my case over decades without a diagnosis, you end up leaving a doctor's office feeling like a neurotic hypochondriac.
Exactly this! And they see you as a basket case.
This is how I feel every time I see a rheumatologist. At least in the US, rheumatologists do not want to offer any treatment unless you have the traditional antibodies and this leaves a lot of us with Sjogren’s and Neuropathies out.
@@rebeccabrown5014 But lab values do not correlate with the severity of symptoms. The relevant test is a biopsy of the inner lip mucous membrane!
Wow this is interesting, thank you for sharing.
Is there any treatment or medication for sjogren
Find a Functional Medical Doctor, they can help. No drugs.
It's an autoimmune disease. Check that out.
Coimbra protocol
@tessmoore3762 I don't have the money at the moment for a FM doctor, but when I do that's where I'll spend it. I've seen them in the past. Would you share with us what your FM doctor suggest you do? This might help me and others in the interim.
Usually something like Plaquenil or an immunosuppressant like Methotrexate.
I really wanted to watch this video, but really could not hear the speaker and I had the volume all the way up.
I didn't have any problems with the audio so it must have been on your end. The RUclips video is fine.
How about turning the subtitles on they are there.
I just watched the Webinar from a year ago. There was mention of a booklet coming out last July by Sjogrens Europe on coping with the disease. Does anyone know how to find the booklet?
Ich habe sehr hohe Sjögren- und Rheumatypische Antikörper und fühle mich sehr antriebslos und geschwächt. Da ich aber keine Entzündungswerte im Blut habe, erklären mich die Rheumatologen für gesund 😢.
I don't know if I have Sjogrens yet, but the fatigue is debilitating.
This is so interesting, although I don't understand all of it. When I had my first child 40 yrs ago something changed. Only about ten yrs ago I was diagnosed with Hashimotos Disease, but even with thyroid hormones I've never felt better. I'm wondering if I I now have Sjogrens. I have all these symptoms, but the fatigue is by far the worst. So far my testing is negative.😊
No, I don't have Sjogrens, just low ferritin. That explains everything. I cannot believe how all these doctors that I've seen did not suggest looking into this. It's easily treatable with iron supplements.
Excellent presentation. Thank you so much Dr Alunno.
Rituximab could work for small fiber neuropathy/dysautonomia aused by Sjogrens? I will probably try asap.
Treatment for primary Sjogren's syndrome with the B-cell depleting antibody rituximab (Rituxan) failed to provide statistically significant improvements, despite the increasing evidence for B cells in the pathogenesis of this disorder, French researchers reported.
How are you now ?
Is there any known correlation with Low Copper/Copper Deficiency and Sjogren's Disease?
Vitamin D you can buy indoor uv lighting i have discoid lupus can not tolerate uv at all having supplements.
A&W sugar free works as well.
The most common topic for lupus or SS patients discussed and desperate for answers and help. I watched to the end, wonderful interview. Not many info out there talking about the topic in this level. Thank you so much ❤
'Promo sm'
thank you
good job
any updates thank you